A Road Less Travelled – Living with Neuroendocrine Cancer

Putting a puzzle together…

So, after causing some confusion with my last post (now updated), I though I would look back at the various symptoms I have had over the years, and how once they are all put together maybe the profile fits.

I have had various stomach problems over my life, which I just put down to genetics, and I have always had good patches and bad patches. My father suffered with his stomach, and in fact died of bowel cancer which had metastasised into his liver. Also, one of my sister’s has problems too.

But finally getting to where we are now started a couple of years ago following some adhesion surgery done on my stomach, which was a repeat of what had been done 7 years previously. The symptoms were the same, so there seemed no reason to think this anything other than the fact that some had come back; a common occurrence.

There were a few new adhesions, but nothing major to cause the severe symptoms I was experiencing. So the the thought was that maybe this was dietary as I was bloated all the time and getting stomach cramps as well as episodes of diarrhoea. I did a 3month exclusion diet and I was diagnosed as wheat intolerant, which helped relieve my symptoms on a day to day basis. However I was still getting the episodes of severe symptoms every few weeks or so but with no identifiable triggers, which now also included night sweats.

Also, over previous years, other symptoms were also appearing, but these were always considered in their own right. I started to get very tired, my GP checked my thyroid, blood sugars, liver and kidney functions, all ok. Walking up the stairs at work, usually not a problem, was sometimes making me breathless and I was getting lightheaded. When we were out walking, even a fairly gentle incline was becoming a problem sometimes, but not all the time.

There was no rhyme or reason to it, then my blood pressure decided to join the party and was all over the place, couldn’t make it’s mind up whether it wanted to be up or down(mostly up), normally I was 120/80 with little variation. I had a 24 hour monitor fitted, this indicated nothing out of the ordinary, and I did the cardiogram on the treadmill, perfect.

I have also suffered with swollen feet for years, which is especially bad in my left foot, it never seems to return fully to normal size, again my father always suffered with swollen feet, especially his left, and my oldest sister has lymphodema in her legs too, which was inherited from my grandmother. So never really thought much of it, just one of the many cards I had been dealt in the health lottery.

I was well and truly fed up with myself, I just did not understand what was wrong, was I becoming a hypochondriac, was it all in my head? I have a good diet and consider myself to have fairly good fitness. But I was never out of the doctors and I am sure that they were as fed-up of seeing me as I was of seeing them. Finally I was sent for a a variety of scans; ultra sound, CT, MRI and nuclear, a tumour was visible but small. The scan results were then followed by more blood tests and the 5HIAA, these were repeated four times in all.

Episodes of symptoms were getting closer together, and really impacting on my quality of everyday life, both personal and work. Following further discussion with my consultant, it was agreed that if this tumour could be taken out that would be the best outcome, the very least would be a biopsy to understand what was going on. The surgeon agreed to give it ago, having first sent me for another CT to make sure they had the most up to date view. This was quickly followed by the biopsy and finally I have arrived here. I have a diagnosis.

Since starting my treatment, my stomach seems more settled and associated bloating, cramps etc are much less severe, which I hope is a good sign. The tiredness can be a bind, but at least I know why now, and I am working on my acceptance of this, I have also seen an improvement with my swollen feet. Within a week of starting the daily injections, I had a normal sized left foot again. It still swells up during the day, but not to the extent that it did, and returns to normal size after being up for a while or overnight. I am hoping that this is a permanent improvement as I can wear shoes I haven’t worn for years:-) So looking for a positive, maybe now I can get some new shoes that are a bit more exciting than they have been for the last few years, mostly a woman thing, I think!!!!